A fundraising campaign launched 18 months ago in memory of a seven-year-old girl who died from a rare and aggressive brain tumour has just topped £335,000.
Daisy Brooks, from Bures, was diagnosed with diffuse intrinsic pontine glioma (DIPG) in May 2014 and passed away in November that year.
Her parents Anna and Louis – with help from family, friends and some complete strangers – have poured their energy into raising money to further research into DIPG, via the charity Funding Neuro.
Although there is no cure for DIPG, the Brooks were given hope when Daisy was offered experimental brain surgery at Bristol Children’s Hospital.
This involved a software-guided robot installing a series of catheters to deliver chemotherapy direct to the tumour. Daisy was the first child in the world to have the treatment delivered in this way.
Fundraising events have ranged from a fancy dress walk and a Three Peaks challenge to a head shave, a quiz night and a charity Christmas card featuring one of Daisy’s drawings.
The devotion of all those who have taken on challenges in her memory has so far netted an incredible £335,000 which will fund a new trial that is due to start later this year.
Mrs Brooks said: “We never really had a target in mind, but we could never have dreamt the total would be this high.
“It has come from a mix of large events and big donations, but most has been little bits and bobs from individuals doing challenges like half marathons, cakes sales and sponsored events.
“Every day there’s another amount of money that has been pledged on the Just Giving page – it’s phenomenal.
“The vast majority of the money we have raised has gone to Funding Neuro towards the clinical trial, but some has also been donated to East Anglia’s Children’s Hospices who looked after Daisy so well, and to the team in Bristol to fund new researchers and equipment.”
Mrs Brooks said the hospital, which still needs to raise another £200,000 to reach its £900,000 target, was thrilled with the cash injection to help get the clinical trial off the ground. The family continue to have a close relationship with neurosurgeon Professor Steven Gill and his team.
She added: “When you are given a diagnosis of DIPG, you are basically told from day one that your child is going to die. We wanted to support this trial because of the hope it gives to families – the hope that life can be extended through the treatment.
“The hospital is pleased with the progress that has been made and the team has treated quite a lot of children with DIPG since Daisy, but the treatment has to be paid for by the children’s families.
“It costs £45,000 per child to have the treatment. With the money that has been raised, 18 children will be able to be treated through the clinical trial, and they will be coming from all over the world for it.”
This year, Daisy’s charity has been chosen as one of the recipients of funding from Sudbury Fun Run.
To donate, visit their Just Giving page and for more information about the fundraising, see here
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